Tuesday, March 19, 2013

Medical update.

Yesterday was Zihao's appts in Seattle.

We had to leave at 5am ish. (!!) and woke at 4:50. You have never seen 9 kids wake, pee and get dressed and buckled so fast in your life.  :) They are used to it. I had all clothing laid out which of course helped.

We were in the van at about 5:15 or so.

We arrived late as the pass was really quite stormy. We've been traveling all winter and this is the first time it's been bad.

The main concern with Zihao is his deafness and therefore speech. His palate is quite botchy but ... he's using it well. He says all the difficult sounds and letters that Azlan cannot say...proving the muscles are functioning in his palate. He does have a hole in it but they'll repair that later.

He has level 1 microtia (ear deformity) with one being smaller and lacking a fold. They will do an otoplasty when he is 6y.

The appt went great with no red flags.  He does need kidney ultrasounds, spinal X-rays, hearing exams, eye tests and the whole works due to having Goldenhar.

In there, we got Taizi in to be weighed.

So. 5 months. 9.5kg.

He had his heart procedure and 10 days later...was weighted at 9.4kg (all on the same scale by the way).

Another 18 days later and he was ... 10.0!!! They were shocked!!!

He gained 600 g in 18 days. They said the normal for a healthy 3.5yo is 180 g in 30 days so not only is his nutrition content off the charts but now so is his gain!  We aren't even connecting this to the PDA repair as they were shocked it was no gain after 10 days....this one we are giving 100% to prayer.

And now that we KNOW the weight gain, we can see it. True story.  His hips have been plain and simple...bony.  Well they are not. I cannot see the bones sticking out!

Besides medical update I want to update about Zihao.  He's been doing so well. He really has a big piece of my heart.  Every time he talks and says a word funny due to his cleft...I think I melt a little.  And he sparkles.


Zihao and Mommy played this cute game in the doctor's office on the iPad.  He was so cute. He had to get some people out of the train before he could let new "peoples" in.  Well he didn't know to move them out so he started shoo'ing them with his hand and saying "GET OUT" I was laughing so hard. ;)


The other day, we stopped by to see a fence client and the man asked Dean if he could meet his "new children".  So Dean got Zihao out.  It was so wonderful to see the look of fear on his face as Dean took him out to meet this man. He clung to Dean and cuddled in his shoulder, refusing eye contact with the gentleman.  Why is that so wonderful...? Ahhh. Because it's been 5 months of begging for the attention of every stranger and this time, he seemed scared that he was leaving us.  Also while in Children's he was very cuddly with me when each doctor came in. Seeing signs of great, healthy attachment.

We stopped at a very cool waterfall on our way home. The kids loved it.


Azahria Peace looking at the falls :)



And we got home long before midnight! Bonus! ;)

Today, a box came from Amazon for Izrael's birthday. Oh she loved it.  My sister sent the cutest outfit and toy purse filled with a cell phone, lipstick, credit card and other goodies.


Someone commented on how big she's getting. She IS big. She's just 2 and taller than Zihao who is almost 4.  She wears 3t and 4t.  She's fully potty trained except for at night and sleeps in her toddler bed. Oh...and I adore her! 


In other important news:  we have a new pediatrician. Yes. The last one that I love...sent us certified letter stating he would no longer be our doctor after the day I cried in his office.  Lovely.  Nothing like leaving us completely up a creek in the middle of non stop doctor appts and referrals.  Well...it all worked out. I told this one the entire story and she said "hmmm. He is a very nice man...I'm glad to hear you say you loved him and were shocked by this.  Here's what I have to say to you. I'm not a god. I don't have a god-complex.  I won't know all the answers, but I'll refer you to someone who does.  I love that doctor as well, he's a nice man. BUT. Don't ever argue with a mother's intuition and you ALWAYS have the right to a second opinion. I wouldn't have put that injection of steroids into my son's head without a second opinion either so KUDOS to you for standing up for your son."  A humble "thank you" followed.  

She's referring Azlan to our new team in Seattle which we are excited about. All 3 boys will be with the same team ( and we LOVE them).



I had a chiro appt today b/c ... well...hmmmm...I have a very high pain tolerance...and little will slow me down...but I'm in a 7 out of 10 pain at all times right now...due to my ribs.  I went in and he said I had 3 ribs out. Really out. So out he doesn't know if he got them back in and on the ride home I confirmed he didn't. He also said "we probably won't get them back in until the baby arrives". No problem. That's only like 12-13 weeks from now.  ;)  I cried. And then decided this too...is a choice.  All about expectation. I will not and cannot let this slow me down. I can handle the pain. I will handle the pain.  And I'll take the prayers :)

I feel like this is such a vomit of words that don't go together at all. I do apologize.  My brain is just spewing things out in no particular order tonight.  


We saw our aunt and uncle a few days ago and they snapped this pic of us in their RV. Here we are.  I look at this and get emotional.  For God to take something and someone so broken. So flawed. So very ordinary.  And make something so beautiful. 4 children from different parts of the globe...a family.  You may see the skin color differences, but I assure you, they don't.  



For the last day I cannot get a song out of my head. It's not how I feel right now...though I certainly do at times.  But I have learned to share it because God is giving it to me for someone.  The words are powerful.  So many of you are feeling this for different reasons in your life.  Take heart.  Jesus has overcome.  He already sees the end.  Take heart.  

Please click on the link and watch the music video with lyrics.






5 comments:

  1. Hi! My husband, Dale, met you while in China. He was with our daughter, Camellia. I was back home in Ohio with our other three. I just wanted to tell you that I love your blog posts, and while I cannot relate to life with almost 10 children, there are so many levels on which I CAN relate. I, too, love Tenth Avenue North, and Worn is my favorite song on their newest album. Your entry on the pontoon boat just made me smile. We have a pontoon boat, but it's not near as nice as the one you've described. Ours is a bit of an eye sore, and the first time I saw it, I told Dale it was the ugliest boat I'd ever seen. Then I saw my boys climb aboard, and their faces lit up, and I couldn't deny them the memories they would make fishing with Daddy. I had to live with an ugly couch for another 6 years so they could have that boat, but in the end it was worth it.

    I'd like to thank you for taking the time to write so regularly. I try to check back every day for the latest news, and I get so excited when there's something new to read. I absolutely love when you post pictures of your beautiful family. Although you're on the other side of the country, I feel like we have so much in common and could just start a conversation at the drop of a hat.

    I love your heart for God and your dedication to family. May God continue to bless your lovely family. We'll pray for your kiddos and your rib pain as you carry the newest Walker.

    Nicole Limburg

    ReplyDelete
  2. Nicole~I so wish you were in China with your husband, I would have loved to have met you! How is your sweet girl doing? It was so sweet of you to write me and I'd love to get to know you more!

    ReplyDelete
  3. Camellia is doing great! So full of energy. It's kind of ironic...when Dale was in China, he kept telling me how weak she was and that we would need a stroller because she couldn't walk very far. Hahaha - that little stinker had him fooled. I've never seen a kid with her level of energy! To think that we were so concerned about her heart condition. Once she was home, we had her checked out at the Heart Center at our Children's Hospital. They told us she's a perfectly healthy kid, and unless she develops coronary disease in her 70's, she's got no problems. She just came with the battle scar to show where she had been fixed.

    The other three (Jack 10, Ian 8, and Chloe 6) just adore her, and she feels the same for them. Though we do have a bit of an alpha female complex we're dealing with. Chloe is not allowed to hug, snuggle, kiss, touch, or sit on Mommy's lap without Camellia getting jealous and hitting Chloe. That's a tough one because Chloe adores her so much and just wants to be the doting big sister. For some reason Camellia doesn't seem to feel threatened by the boys.

    ReplyDelete
  4. I suppose my biggest concern right now is waiting to get her teeth fixed and her slow speech development. Dale was convinced that the poor child had never had her teeth brushed in China, and her gums would bleed terribly every time we attempted to get the toothbrush in her mouth. We've come a long way, and her teeth are looking better, but it hasn't been without a struggle. We had a horrible incident with a pediatric dentist (I thought of you with your doctor troubles). The office staff was less than caring or understanding of her situation and the doctor told me, while they had me holding my daughter down flat on her back so they could brush her teeth, that she was just being dramatic. Yes, a child who has never known love being pinned down to have a mouth full of toothpaste and blood, and screaming hysterically and fighting me...that's real drama for you. Needless to say, we never went back, and we talked to some nicer dentists who told us to give her a few months to get used to brushing her teeth before doing procedures. We can see 4 or 5 cavities in her mouth, and we have to wait to have them fixed because some less than caring doctor had a god complex that day. We had several weeks of her refusing the morning routine for me and being downright combative when she saw the toothbrush after the incident with the dentist. She has improved significantly since then.

    Camellia understands so much of what we say to her, but her speech is so delayed. We knew that from the reports, and the adoption doctor said that would be normal given that she had only known adverse circumstances and spent a year of her life lying in a hospital bed. Dale and I were thrilled that she said the few words she did when he received her. It was that moment of "Oh, thank you, Lord, at least that little brain is working." However, her words have been slow to develop since she came home. I've read other families' blogs, and their children seem to be speaking in short sentences or phrases. We just aren't there. There are about three words she says that are very clear. There are others that only we would know what she's saying. They're consistently the same, but they're not Chinese or English; they're just Camellia. Dale says he's not worried because she's only been home four months. I know he's right, but it's hard not to wonder when you hear other people with children younger than yours speaking of their children saying complete phrases. I know you can relate. It's so much like having a 1-2 year old trapped in a 4 1/2 year old body. Honestly, I feel a little terrible for even telling you I'm worried about little things like this, given the medical conditions you're dealing with. But, as a sister in Christ, I know you would understand a mama's concerns about her child, whether or not you're dealing with far more complicated circumstances. No matter how big or small, we mommies just want to make things better for our babies.

    Thanks for taking the time to write back!

    Nicole
    dlimburg@neo.rr.com

    ReplyDelete
  5. This song was meant for me... Thanks for the release of tears! :)

    Siobhan

    ReplyDelete